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COVID-19 IDD: A global survey exploring family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers
UCD Centre for Disability Studies, University College Dublin, Belfield, Dublin, Ireland.ORCID iD: 0000-0002-9083-3457
Living with Disability Research Centre, School of Allied Health, Human Services & Sport, La Trobe University, Bundoora, Victoria, Australia.ORCID iD: 0000-0003-4915-2729
Canadian Institute for Inclusion and Citizenship, University of British Columbia, Vancouver, BC Canada, Canada.
Tizard Centre, University of Kent, Canterbury, Kent, United Kingdom.
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Number of Authors: 262020 (English)In: HRB Open Research, E-ISSN 2515-4826, Vol. 3, article id 39Article in journal (Refereed) Published
Abstract [en]

Background: This protocol outlines research to explore family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin’s Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies. © 2020 Linehan C et al.

Place, publisher, year, edition, pages
London: F1000 Research Ltd , 2020. Vol. 3, article id 39
Keywords [en]
Caregivers Carers, Coronavirus, COVID-19, Health Disparity, Intellectual and Developmental Disability, Intellectual Disability, Pandemic
National Category
Social Sciences Interdisciplinary
Identifiers
URN: urn:nbn:se:hh:diva-43595DOI: 10.12688/hrbopenres.13077.2OAI: oai:DiVA.org:hh-43595DiVA, id: diva2:1506649
Funder
Swedish Research Council Formas, 2020-02694Available from: 2020-12-03 Created: 2020-12-03 Last updated: 2020-12-04Bibliographically approved

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Tideman, Magnus

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